A Spoonie Poem for All With Chronic Illness

My friend Misty is a Lyme Disease fighter, and she’s been fighting it for more than fifteen years, though she was diagnosed within the last two years, about the same time I found out I had fibro. We grew up in the same small little town towards the Oregon coast, and since I never went to high school with her, being sent off to private school instead, we didn’t have an opportunity to speak for many years. Thanks to the magic of facebook, we are back in touch. I’ve learned a lot from Misty.

In addition to being a totally courageous and fabulous warrior kindred spirit, she is also a mom to two little ones. She just had her second, against all odds, against everything she’s been told by doctors about her prognosis. She keeps searching for a cure on her own, she keeps educating others about tick borne diseases, and she keeps building her family. She fights LD with a holistic, carefully researched approach. That kind of honesty and determination deserve some love. Though I wish she had her own blog to record her thoughts because her writing is incredibly strong and poignant, you can understand why a mom to a little boy and a new baby girl, a mom who suffers from advanced Lyme Disease, does not have the energy to keep up a blog. When she posted this poem on her facebook, I had to ask if I could share it on her behalf, because I’m feeling really lost and this piece of writing calmed me down and reminded me that as much as I’m feeling rejection right now, there is a lot of love in the spoonie community, enough to make up for what I’m missing. We are never fighting chronic illness alone, no matter how geographically separated we are, we spoonies do such a great job of always lifting each other up with what little energy each of us has.

I’m really delighted that Misty said I could share her beautiful poem, and I hope it helps someone else feel less alone and more understood.

THIS IS DEDICATED TO ANYONE SUFFERING FROM CHRONIC ILLNESS:

by Misty Perkins
when all your talents are unusable
All your intelligence faded away
That spark you had has flickered
When all your motivation taken away
When all the things that define you are gone
what is left at the end of the day?
When memory fades
All you feel is confusion and rage
When your bones ache
And your body disobeys
How do you answer when they call your name?
Are you really you, when you’re not the same?
When you can’t find yourself
And you’re lost in a daze
Does anyone care to trouble with the maze
Will they see you there, or pass on by
Will they hold you tight
Or watch you cry
When you have no one else, and you’re lost to yourself
How do you cope, when no one can help?

I don’t have the answers to those questions, but I am closer than I was a few years ago. Progress, not perfection!

Thanks you, Misty, for allowing me to put your poem on my blog so others could benefit from it too.

Thank you for sharing!

Like this:

Related

About Jessi Finds Out Fibro

Hi, and thank you for finding your way to my corner of the web! I'm on a journey to empower myself and hopefully others through shared courage and compassion. I write Finding Out Fibro, a chronic illness and chronic pain awareness blog that is not just about fibromyalgia, as well as a new project making jewelry under the Etsy name Hopeful Spoon. Please check out the shop and share if you can! Thank you for your support!
My other hobbies include defeating ableism anywhere I find it, upcycling old junk into funky awesomeness, raising my voice to erase stigma against invisible illness and mental illness, baking, collecting vintage kitchen ware, sharing body-positive messages, playing around in photoshop, abstract painting (especially in neons and metallics!), advocating for those living with chronic illnesses and mental health challenges, seeking safety and upholding visibility for LGBTQIA individuals living with physical and mental disabilities, researching and testing plant-based remedies for chronic pain, and spending all my spare spoons in my veggie garden.
This is my opportunity to do more than just survive with chronic illness. This is me learning how to live well, even though there is no cure for the war my body is waging on me.

One response to “A Spoonie Poem for All With Chronic Illness”

Beautiful and powerful. Thank you to Misty and to you for sharing her words.

I just realized that I haven’t been navigating your page properly. Because I get too overwhelmed with my blogroll and with bloglovin, I typically just go straight to my favorite blogs when I’m up to it and I haven’t seen a new post from you. I JUST tonight saw your “new posts” section on your sidebar. Duh! I have some reading to do! Yay!!! And I have missed your posts so much 🙂

Follow Blog via Email

sign up for Ebates for FREE and get cash back on all your online purchases!

Click the picture below to sign up to get free cash back on almost any online purchase with this easy app that deposits right into your paypal account or sends you a check each month! I appreciate your support so much.

Help me afford to adapt my life around my illnesses by starting your own Free 30-day trial of Audible or click the link and complete any regular shopping on Amazon once you're there.
I make $5 when you start your free 30-day Audible trial and 4-6% of every purchase made on Amazon within 24 hours of using this link.
THANK YOU FOR YOUR SUPPORT!

Awesome Posts

Featured Posts

“Disability doesn’t make you exceptional, but questioning what you think you know about it does.” – Stella Young The danger of being viewed through the lense of the “inspiring cripple” archetype is that it was created by ableists as a tool used to invalidate those who are struggling. It means that people expect things from you that you […]